Experiences

Hypermobility, the search for an effective treatment

The story of a girl with the Hypermobility Syndrome.

Names are fictitious for privacy reasons.

 

Firstly I would like to introduce myself: I am Lieke, 16 years old and I live in The Netherlands.

Seven years ago I started to have more and more problems with my joints. I consulted many different doctors with my parents to try to find out what was causing this pain. We were referred by our family doctor to various specialists and I was subjected to many examinations, not all of them particularly pleasant. To make a long story short: it took four years before it finally became clear. Many doctors did not know exactly what I had and often called it 'strain’. This, while I could no longer participate in gym lessons, could no longer go to school on my bicycle and no longer take part in any sports. The rehabilitation specialist diagnosed the Hypermobility Syndrome ( HMS). It was good to find out exactly what it was and where the pain was coming from. We found out that not much is known about this illness and that little could be done to help it. The rehabilitation specialist advised continued movement and not to think too much about it. In the meantime not only did I have more pain in my joints but I was also troubled by subluxations. We visited various physiotherapy practices but this did not seem to help much. The only way to make my body stronger was with a lot of training. This however did not work because with the slightest exertion my joints started to hurt. Moving was difficult because joints often became dislocated. This hurt so badly that I could not exercise again for a while. And that continued for a long while. Exercise, dislocate something, brace on, take it easy again and try again next week. My joints became steadily worse. I could do less and less and lived as a 14 year old 'pensioner'. I could not cycle anywhere, shopping with friends was too tiring and evenings out were a disaster. At one time I suffered six subluxations a day! This really was a all-time low. My parents were desperate. They saw that I was always in pain and becoming slowly more and more isolated. After all I could hardly do anything with my friends. Even going to school was a problem. I always went to school on the bus but this was no longer possible because there were not enough seats on the bus. I had to be taken to school by taxi. In a taxi with other younger children who were all mentally handicapped; I hated it. I did not want to be taken to school in a taxi and I am not like those children. It was a very bad experience for me.

This was about the time we came into contact with Bugnet therapy. We had tried nearly everything, even a diet which left out products that were bad for the connective tissues. This meant leaving out almost everything that tasted nice. ‘Bare spaghetti’ was about the only thing I could eat. This was not a success, so my mother continued her search. In the meantime my younger sister had received the same diagnosis as me, she has the Hypermobility Syndrome as well.

 My mother found Bugnet therapy on the internet. The only place we could find where this therapy was actually given was in Wassenaar. There is a physio-Bugnet therapist there who works with HMS in accordance with this therapy. Wassenaar is quite a distance away for us, about two hours by car, but we were so desperate to find someone who could help us that we got in the car; my father just drove without complaining about the distance. Our first visit to the practice took a long time, three hours. The therapist wanted to examine us first and find out what level we were at. She then wanted us to do some exercises and she explained everything. Eventually we were outside and full of good spirits. This therapy was different to the others we had had. It was all about tensing the muscles, but not about moving the joints seeing as this was difficult for us. We had to do the new exercises twice every day. It was very hard in the beginning, my muscles were very weak. I had little strength and started to shake when I tensed my muscles; I was that weak. After a considerable period it started to get better and I became stronger. The affect of the exercises was clearly visible. The exercises became easier and I could participate more and more in everyday life. That was about a year ago. I can cycle again on a bicycle with pedal assistance and I am able to move around independently. I am going to school on the bus again and I will soon be starting fitness training. The therapy has helped my sister and I; I only have one subluxation a week now! That makes an enormous difference. I am a 16-year-old again, a young person! I can go out again and shop with all my friends. I even have a part-time job in a restaurant! This therapy has altered my life incredibly and we haven't finished yet! We will continue with new and more difficult exercises, but I am so very pleased with the results up until now!

I hope to be able to help other young people and their parents with this story. Hopefully other people with this illness will come into contact with this therapy and that this story will help convince them to have faith andpersevere. I definitely recommend it in any case!

Lieke

September 2011